Leves of Remicade. Change to 10mg/4weeks

[Hera]

Hello,
I have crohn's colitis being treated with infliximab 5MG/4 weeks, aza and pentasa. But I am going to change to 10MG, because the dose of 5 has already stopped working for me.

My levels now are about 13. They were about 15 when it worked for me.

What are your levels usually being in remission? Do you think that increasing the medication could help in my case?

 

[Jo-mom]

Hello, levels of 13 are good for infliximab. Usually anything over 4 is considered good. My son's GI likes to see about 7 to 10. If you are already at 13 and it isn't working, I'm not sure an increase will make a difference. What does your doctor say? Previously, my son's levels were at near zero and doubling the dose from 5 to 10mg made a huge difference for him.

 

[Hera]

My doctor is in favor of switching to another drug, but I asked him to try the last chance.

The change scares me because if I change infliximab will no longer be among the possible options. (I only used it for 10 months). After all, each body is different. Maybe I need more levels than other people.. Actually, I would not like living with the doubt of not trying at maximum doses, but perhaps it will all be a waste of time

 

[Scipio]

If 13 already isn't working then it feels like doubling the dose is a bit of a long shot. But IMO it's still worth trying to see if Remicade effectiveness can be retrieved for you. Sometimes if you give a big enough dose the drug can overpower the anti-drug antibodies that are causing the loss of response.

You want to hang on to your first biologic as long as possible, because the follow-on biologics often do not work as well as the first one did.

 

[Hera]

Yes. I think it's worth a try and not living with the doubt. Who determines what level each one needs? they really don't know. My ulcers are deep and probably difficult to heal, I currently weigh 39 kilos at the age of 36. So not very standard. I will write here about how it went.

 

[Hera]

updating:

By the moment I'm still on 5mg/4 weeks. calpro: 600. The plan is start to 10mg/4weeks on december.

But i' ve just check my infliximab levels and they have changed a lot in the last measurement.
they have gone from 13 to >20 in just 2 months. Usually my levels were close to 13. Actually I don't understand any of this.. Do you lived something similar?

With this increase, I doubt they are determined to go to 10mg/4 weeks. which was gaving me a little hope.

 

[Jo-mom]

Your levels are quite high right now and it should be working. Are you experiencing crohn's symptoms besides the high levels of Calpro?

 

[Hera]

yes, I have daily abdominal pain and bleeding. I've been having these symptoms for a year and a half. I only felt well for short periods when adding predisone. It's maddening. If everything continues like this, I think I'll be a candidate for surgery, and the idea terrifies me.

 

[Scipio]

It's becoming increasingly clear that infliximab is not working for you. But don't give up hope. Just because one biologic doesn't work doesn't mean they all won't. The biologic weapon still has several more bullets to fire at the Crohn's.

If your doc switches biologics they should first try you on another anti-TNF biologic such as Humira. And if that doesn't work they can then switch to a different class of biologics such as Stelara, Skyrizi, or Entyvio, all of which work by completely different mechanisms than infliximab.

 

[Hera]

Doctor thinks it would be best to switch directly to Stelara. He hasn't talked about trying another anti-Tnf. My Crohn's is only in the colon. As far as I read Steleara works best in the small intestine, so I was surprised by that choice.
If I go to Steleara, could I go afterwards with Humira for example?

 

[Scipio]

If I go to Steleara, could I go afterwards with Humira for example?

You could. It would be unusual to go back to anti-TNFs after switching out of that class of drugs but certainly not unheard of. I'm on Stelara myself and it works very well for me (ileal Crohn's). I'm also slightly surprised that your doc wouldn't try Entyvio first for Crohn's confined to the large bowel, but maybe your GI has been having good results with Stelara and wants to stick with that.

 

[Hera]

I have been taking infliximab since January 2021, I started with 5mg every 8 weeks. Soon I had to increase it to 5mg every 4 weeks. I have been on that dose for about 6 months but still had symptoms and quite inflammation (800 calpro). Doctors were very adamant about switching to stelara but I requested to try upping infliximab to 10mg every 4 weeks.

They reluctantly accepted because they told me that it would not work. Right now I am at 100 calpro for the first time in almost 1 year (I had levels of 3000 two months ago, probably caused by the consum of modulen that was bad for me).

i had read people on this forum who wrote that going up to 10 made a difference to feel better, with drug levels well over 20. thank you for sharing yor experiences because i fought for it, to be to listen to me, I needed to at least try (obviously they didn't see an imminent vital danger and they gave me the ok). but they assured me that I would not drop below 3,000 without trying another medication, and in just two months I am at 100. I don't know what will happen now, but I have silenced the mouths of incredulous doctors and I hope that from now they take into account that there are something beyond a book protocol to follow. We are different, so research, search for the origin of things and personalization of medicine please.

Thanks for writing and I hope this helps someone. trust the doctors but get involved

good day for everybody. I also started taking boswellia, omega, glutamine and vitamin d